Monday, July 9, 2012

From Mommy (again)

Dear Shay,

There have been only two times so
far where I feel the need to hack into your blog account. Turning one year old.
And taking your first steps. That's right,you'rewalking!

Let me take you back to February
7, 2011. You're still in my belly. Daddy and I have been in the hospital for
two days. I've been given medicines I can't remember the names of. A doctor
tells me that I have signs of an infection and the best place for you to be is not floating
around in it. They are stopping the medicines and my body will decide if it's
safer for you to come out. And we'll need to meet with a neonatologist since
you will be born so early. He will need to brief us on things that may or may
not happen to a baby that is born at 25 weeks.

"You
know, he's not going to be a world class athlete."

What? How does a professional
start their parent counseling session with this statement? Don't doctors have
to take classes in patient counseling? Practice for years under other doctors so
they don’t say stupid things to vulnerable parents?

At the time, Daddy and I just
took the comment as a rude statement made by a tactless doctor. In fact, we
were so taken aback by this single statement that neither of us remembers what
else Dr. Doom said. But we remembered his comment when he became the doctor in
charge of your nurse practitioner team a few months later. And every time we spoke to him at
rounds for an entire month. And now, over a year later when I want to call the
hospital and shout, “Shay just took his first steps!”

We had no idea what this could
possibly mean for our unborn child.

Fast forward to March 18, 2011. I
am showing you off to my best friend and casually ask if the results of your
last cranial ultrasound had come back. A nurse checks the computer, and motions
me over to the monitor to read for myself. I get to the end of the report and
there is a new term.

Periventricular
Leukomalacia.

Words I couldn’t pronounce, let
alone remember long enough to ask the doctor the next day what they meant.

The nurse (who was probably not
supposed to have let me see the report) pretended as though she had no idea
what it meant. She called for the nurse practitioner, while I sat for what
seemed like an excruciatingly long time dissecting the wording around the new
terms to figure out if they were good or bad. Although deep down, I knew nothing
new is ever good on a brain scan report unless it’s a word like resolved or improved.

“Oh,
that’s brain damage.”

Seriously?! Do you have to be so
direct? And thank you for being all upset that we called you in here to explain
this to us when you have worked a long day and you’re tired and you weren’t even
supposed to be working today. Because between the two of us, you are the one
who’s having the worse day.

Thank the Lord we had a compassionate
neonatologist in charge of our team that month, who showed us every scan of
your tiny brain the very next day and walked us through exactly what the little
white spots on your brain might mean.

“There is an 80% chance that he will have cerebral palsy or some sort of
cognitive disability.”

At that moment, all of our dreams
of what our son might be like crashed around us in Pod D. Our visions changed
from someday having a yard that you could run around in to hopefully being able
to afford a house with a ramp to accommodate your wheel chair. From not being
able to wait to hear you speak “Mama” and “Dada” to praying to God that you
would be able to one day even know who we were. Preparing for a life of
therapies, meetings, and daily struggles.

As you grew and continued to
develop on track, we figured there was less of a chance that you were going to
have developmental or cognitive delays. You hit every milestone exactly two
weeks later than my email newsletters said you would. And then came the
walking. Yes, children may walk as late as 15 months. Yes, you were a cruising
master. Yes, you loved being upright and walking when holding someone’s hand.
Yes, you continued to make teensy bits of progress each week. But that
percentage just stuck in the back of my mind. Nagging me. The weeks kept
passing. Your baby friends were walking. Other preemies were walking. Shay
wasn’t walking.

Early Intervention called to
check up on you. “How is Shay doing?”

“Well, he’s not walking yet, but
I know he technically has more time before I should worry, but he doesn’t seem
to have great balance, and yes it seems to be confidence related, but what if
it’s because his muscles aren’t strong enough? I’m just not sure if…”

I’m sure that’s exactly what she
was expecting to hear! I received the paperwork for your six-month review that
we had during that phone call on July 5, 2012. It said we were to have an
annual review at the end of August to update your paperwork and give you more
time to develop before we called in a Physical Therapist for an evaluation.
Great. More worrying.

That
night, Daddy and I were playing with you on the floor. You were holding
a bottle of your vitamin drops. You stood on your own holding that bottle. You
continued to stand. I told Daddy to grab the camera to film you standing.
Something you hadn’t done for more than a few seconds. You kept standing there.
Then you took a step. And another step. And another. And landed in my arms! I
gave you a squeeze and stood you back up, in my mind thinking, “Do we count
that as walking?” You had taken steps in the few days before that, but always
when you were holding onto something first, and even then it was only an
average of three steps, usually two being at a 45 degree angle to the floor, before
plowing into Daddy or I. You stood there again, then took a few steps toward
Daddy. We were giddy with excitement! You walked between us until you cried
from exhaustion, then we cried that night as we put you to bed a toddler, and
no longer just a baby.

By the next day, you were taking
more steps than we could count and catching yourself if you fell off balance.
Your main mode of locomotion wasn’t walking by a long shot, but we felt
comfortable saying that you were finally walking.

Shay, to say that we are ecstatic
that you have started walking is an understatement! You’ve beaten the odds
again! I think to myself, “Better late than never!” But I want to let you know
that if ‘Never’ would have been our reality, we would have loved you just the
same!